Citation
J Haem Pract 2014; 1(2):J Haem Pract 2014; 1(2): 1. doi: 10.17225/jhp00015

Authors: Kate Khair, Daniel Hart

Kate Khair
Nurse Consultant Haemophilia
Great Ormond Street Hospital, Great Ormond Street, London WC1N 3JH, UK.

Daniel Hart
Consultant Haematologist
Royal London Hospital, Whitechapel Rd, London E1 1BB, UK.

Abstract

In this second edition of The Journal of Haemophilia Practice, Robin Sager questions the diagnostic labeling of women with inherited bleeding disorders. She asks whether a haemophilia carrier with symptoms is a haemophilia carrier, a symptomatic carrier or a woman with a bleeding disorder. Furthermore, she ponders whether a diagnostic label of “woman with haemophilia” or “woman with a bleeding disorder” would afford such women better access to healthcare and outcomes more like those we expect for males with haemophilia. But would such a revision risk health care services losing contact with asymptomatic carriers? And how good are we at supporting the clinical, genetic counselling and/or psychosocial needs of mothers, sisters and daughters of males with haemophilia, whether symptomatic or not?

References

  1. Sager R. Women with haemophilia: more than just carriers. J Haem Pract 2014; 1(2): 2-7
  2. Kasper CK, Lin JC. How many carriers are there? Haemophilia 2010; 16(5): 842.
  3. Haga SB, Barry WT, Mills R, et al. Public knowledge of and attitudes toward genetics and genetic testing. Genet Test Mol Biomarkers 2013; 17(4): 327-35.
  4. British Medical Association. Medical ethics today. 2nd ed. London: BMJ Publishing Group, 2004: 230-1.
  5. Griffith R. Nurses must be more confident in assessing Gillick competence. Br J Nurs 2013; 22(12): 710-1.
  6. Khair K, Kumar P, Mathias M, et al. Successful use of BPL Factor X concentrate in a child with severe factor X deficiency. J Haem Pract 2014; 1(2): 8-10.

The Journal of Haemophilia Practice is published by Haemnet.

Haemnet is a registered charity that brings together and gives a voice to haemophilia nurses, physiotherapists and allied health care professionals, providing forums for collaborative research, educational activities and support.